“I was never one of those people who just jumped right in for me”: patient perspectives on self-advocacy training for women with advanced cancer

Abstract

Purpose

Patients with advanced cancer experience many complicated situations that can make self-advocacy (defined as the ability speak up for yourself in the face of a challenge) difficult. Few self-advocacy interventions exist, and most are atheoretical with minimal patient engagement. The purpose of this study is to describe participant perspectives of a novel, self-advocacy serious game intervention called Strong Together.

Methods

This was a qualitative cross-sectional descriptive study among women receiving cancer care at an academic cancer center within 3 months of an advanced gynecologic or breast cancer diagnosis. Participants randomized to receive the intervention completed one-on-one semi-structured interviews 3-months post Strong Together and had the option to share voice journals about their experiences. Inductive qualitative approaches were used to descriptively analyze transcripts and voice journals. Descriptive content analysis approaches were used to group similar codes together into themes summarizing participants’ experiences engaging with the Strong Together intervention.

Results

Participants (N = 40) reported that the Strong Together intervention was acceptable, noting that it was realistic and reflective of their personal experiences. Overarching themes included seeing myself in most scenarios and wanting more content; giving me the go ahead to expect more; offering ideas for how to stand up for myself; reinforcing what I am already doing; and reminding me of what I have. Participants suggested adding additional content including diverse characters.

Conclusion

This study demonstrated that women with advanced cancer were receptive to a self-advocacy skills-building intervention. Future research should explore the mechanisms linking serious games to learning and health outcomes.

Supplementary Information

The online version contains supplementary material available at 10.1007/s00520-022-07531-3.

Background

Patient self-advocacy, or speaking up for yourself in the face of a challenge, is considered a precursor to patient-centered care [1]. To meaningfully engage in their care, patients self-advocate by (a) making informed decisions about their care, (b) communicating effectively with healthcare providers, and (c) building strength through connection to others [2]. Not all patients desire to speak up, but they discover that not doing so will negatively impact their health and well-being [3, 4]. Female sex and culturally ascribed feminine traits are considered risk factors for higher symptom burden, chronic illness, and worse clinical outcomes [5, 6].

Interventions that promote patient self-advocacy (or related concepts like patient empowerment or activation) focus on a variety of skills. Walshe-Burke evaluated the impact of audiotaped and in-person self-advocacy training among adults with a history of cancer and demonstrated the intervention’s positive impact on patient communication, information seeking, problem-solving, decision-making, and negotiating [7]. This intervention was later tested among diverse groups of patients with solid tumors and hematologic malignancies and shown to improve similar outcomes. This intervention’s lack of theoretical underpinning, low sample sizes, and minimal flexibility in delivery limited the ability to evaluate the intervention’s efficacy and broad impact [8, 9].

The current lack of theoretically based interventions to teach self-advocacy skills [10, 11] prevents patients with low self-advocacy skills from effectively engaging in their care and puts them at risk for poor outcomes such as poor symptom management, low quality of life, and lack of patient-centered care [13, 14]. This is particularly true for individuals who are newly diagnosed with cancer when treatment decisions are often complex, cancer- and treatment-related symptoms and have a huge impact on quality of life and managing social support can be challenging. Women with advanced cancers, including breast and gynecologic, experience a distressing number of symptoms interfering their well-being and ability to remain on treatment [15, 16].

Based on the lack of robust, theoretically based self-advocacy interventions for women with cancer in the literature, our team developed a self-advocacy intervention, Strong Together, for women newly diagnosed with metastatic breast cancer or advanced gynecologic cancer [17], considering that self-advocacy skills are particularly important among individuals with heavier disease burden, complex treatment decisions, and quality of life concerns. The Strong Together intervention was recently evaluated in a pilot study (clinicaltrials.gov NCT03339765) in which it was compared it to a paper self-advocacy educational guide. In addition to our primary aim evaluating the feasibility of enrolling and retaining participants within the trial and delivering the intervention along with preliminary efficacy (manuscript in preparation), a secondary aim was to assess the degree to which participants found the intervention to be an acceptable method for teaching self-advocacy skills. For this aim, we collected qualitative data to help us understand participant perspectives of the intervention. The goal of this study is to describe how patients engaged with, learned from, and applied the knowledge of a self-advocacy intervention with the aim of informing future serious games and self-advocacy interventions.

Methods

Setting and participants

A convenience sample of participants was recruited from a large, academic cancer center. To be eligible, patients needed to be women aged ≥ 18 years old, diagnosed with either advanced gynecologic (stage III or IV) or metastatic breast (stage IV) cancer in the past 3 months, have at least a 6-month life expectancy per their oncology team, and be able to walk, engage in selfcare, but did not need to be working outside of the home (Eastern Cooperative Oncology Group score of 0 to 2).

Potential participants were screened eligible by research staff and then approached during regularly scheduled clinic visits. Interested participants met in-person or virtually (during the COVID-19 pandemic) with research staff who performed the informed consent process. Participants were randomized (2:1) to receive the Strong Together intervention or paper self-advocacy guide. Only those randomized to the intervention arm were included in the qualitative interviews.

Once randomized to the intervention, participants received an Amazon Fire tablet preloaded with the Strong Together intervention. A research assistant oriented participants to the intervention, encouraging weekly usage over 3 months and sending weekly reminders.

Self-advocacy intervention

This intervention is an interactive, narrative-based serious game — defined as a game with an explicit educational purpose — that uses simulated decision-making to teach self-advocacy skills. The serious game modality was selected to balance the skills-training in self-advocacy behaviors (“serious”) alongside engaging characters and choices that change depending on users’ choices (“game”), which has been shown to have high acceptability and impact in behavioral interventions in cancer [18–20]. Strong Together was developed as a mobile application using user-centered design principles alongside patient advocates and oncology experts [17]. It was purposefully designed to be highly accessible to participants with varying levels of health and digital literacy. Details of the game are presented in Table 1 according to the Template for Intervention Description and Replication (TIDieR) checklist [21].

Table 1.

Strong Together Template for Intervention Description and Replication (TIDieR) checklist

Item	Location (page or appendix number)
Brief name
1. Provide the name or a phrase that describes the intervention	Strong Together
Why
2. Describe any rationale, theory, or goal of the elements essential to the intervention	The goal of the Strong Together serious game is to teach patients with cancer self-advocacy skills including making informed decisions about their care, communicating effectively with their healthcare providers, and balancing the support they give and receive. The patient self-advocacy framework guides the intervention design and targets of the Strong Together serious game
What
3. Materials: Describe any physical or informational materials used in the intervention, including those provided to participants or used in intervention delivery or in training of intervention providers. Provide information on where the materials can be accessed (such as online appendix, URL)	A mobile application of the Strong Together serious game was loaded onto Amazon Fire tablets. General instructions of how to use the serious game were given at the beginning of the game. The application is not currently available on public app stores
4. Procedures: Describe each of the procedures, activities, and/or processes used in the intervention, including any enabling or support activities	Participants receive an Amazon Fire Tablet with the Strong Together serious game preloaded onto it. Participants can freely engage with the game at their convenience, as much or as little as they want
Who provided
5. For each category of intervention provider (such as psychologist, nursing assistant), describe their expertise, background, and any specific training given	The Strong Together serious game does not include an interventionist
How
6. Describe the modes of delivery of the intervention and whether it was provided individually or in a group	The Strong Together serious game occurs solely through the mobile application platform
Where
7. Describe the type(s) of location(s) where the intervention occurred, including any necessary infrastructure or relevant features	The Strong Together serious game is delivered remotely. While Internet connection is not required for participants to use the game, it is required for the metadata regarding their use of the game (e.g., time spent, decisions made, review of key skills learned, etc.) to be uploaded to the study server
When and how much
8. Describe the number of times the intervention was delivered and over what period of time including the number of sessions, their schedule, and their duration, intensity, or dose	Participants were encouraged to use the Strong Together serious game once a week for 12 weeks. Each session within the game takes between 15 and 20 min. There are no restrictions on how participants can use the game, and all information and sessions are available throughout the 3-month intervention period
Tailoring
9. If the intervention was planned to be personalized, titrated or adapted, then describe what, why, when, and how	The Strong Together serious game focuses on different self-advocacy skills. While the technology does not tailor its delivery according to these skills, the research team matches participants’ self-identified priority self-advocacy skills to the content of the game so that participants can prioritize sessions that focus on those skills
Modifications
10. If the intervention was modified during the course of the study, describe the changes (what, why, when, and how)	The intervention was not modified during the current study but was altered after the conclusion of the study. Minor adjustments were made and additional content added based on results of this study
How well
11. Planned: If intervention adherence or fidelity was assessed, describe how and by whom, and if any strategies were used to maintain or improve fidelity, describe them	Intervention adherence was a primary outcome of the study (feasibility) reported in separate manuscripts. Tailored intervention reminders were sent via email, phone, or text (based on participant preference) per protocol to all intervention participants. Additional measures will be taken in future studies to proactively encourage intervention adherence among participants
12. Actual: If intervention adherence or fidelity was assessed, describe the extent to which the intervention was delivered as planned	Adherence was generally high with 84.2% completing the desired number of sessions (75% of all sessions). These data are analyzed in depth in a separate manuscript

In the game, participants follow different characters who are women with cancer. Throughout various scenarios, these characters encounter different challenging experiences related to the character’s cancer including managing bothersome symptoms like pain, diarrhea, and fatigue; communicating personal needs and values with healthcare providers; balancing personal priorities with needs of family members and friends; and navigating healthcare options including palliative care. To move the storyline forward, users face multiple decision points where they must decide how the characters should act. By actively participating in the algorithm-based choices of how the characters respond to challenging situations, the users are exposed to contextualized self-advocacy behaviors and the downstream positive aspects of self-advocacy (and negative consequences of not self-advocating).

Participants are encouraged to repeat the scenarios to explore how different response options impact the storyline and characters’ health and well-being. Additional intervention details including initial feasibility and design mechanics are reported elsewhere [17].

Data collection

Interviews

A qualitative study was conducted in concert with the prospective pilot randomized clinical trial (RCT) of the Strong Together intervention. Participants were loaned the tablet with the intervention for 3 months, and semi-structured interviews occurred at the end of the 3-month intervention period. The interview guide asking open-ended questions was developed and piloted prior to data collection by practicing the interview procedures and refining questions and processes among study team members. Interviewers were instructed to reflect on their assumptions, potential biases, and any barriers to their objectivity by journaling these concerns in a private log prior to conducting each interview. The main questions (Table 2) asked participants to provide feedback about the acceptability of the intervention.

Table 2.

Sample interview questions for assessing intervention acceptability

Questions for serious game intervention*
Overall acceptability	Overall, how satisfied were you with the Strong Together program?
	Would you recommend others to participate in the Strong Together program?
Content	Do you recall any of specific challenges that you liked or did not like in the Strong Together program?
	Are there challenges you face that you did not see in the Strong Together program?
Impact	What, if any, impact has the Strong Together program had on you so far?
	How much has the program led to changes in how: (a) you view yourself as a someone with cancer? (b) interact with your healthcare provider? (c) interact with your caregivers, family members, and friends? (d) your health (your symptoms, how you feel, how you use the healthcare system?)
	Who do you think will benefit most from the Strong Together program?
Suggestions for improvement	In what ways could the Strong Together program be improved?

^*The study always referred to the Strong Together serious game as a “program” to participants to highlight the skill-building aspect of the intervention and avoid language that may be inadvertently condescending

One-on-one interviews occurred over the phone by two trained qualitative research assistants, both female graduate students pursuing health-related master’s degrees who did not have other interactions with the participants. If unavailable over the phone, participants were interviewed during regularly scheduled clinic visits. At the beginning of each interview, research assistants tried to build rapport with the participant by asking general questions about their well-being and cancer experience and demonstrating empathy, concern, and understanding. After each interview, research assistants wrote notes reflecting on participants’ responses and any pertinent insights that may not be reflected in transcripts. Interviews were audio-recorded and transcribed verbatim with data stored and managed within NVivo V11 and Microsoft Excel. Participants received $25 for completing an interview.

Voice journal

All study participants were invited to complete an optional voice journal with the goal of having participants describe how they were learning self-advocacy skills in real time. In contrast to the interviews which focused on acceptability of the intervention, the voice journals aimed to collect information about how participants were applying the self-advocacy skills learned in the Strong Together intervention. If participants signed this additional consent form, we provided them with instructions to install an app to record and share voice journals at any time without constraint. Participants received $25 for completing a voice journal.

Analysis

A group of three research assistants (either graduate students or PhD prepared clinicians, one of whom was also an interviewer) analyzed the data during data collection. Research assistants all had prior research experience in qualitative methods and were trained by the study’s principal investigator on the analytic process for this study. They periodically reviewed sets of transcriptions to determine if the interview guide needed to be adjusted to increase the richness of participants’ responses (e.g., rewording questions or adding probing questions).

We used a descriptive content analysis approach to summarize participant interviews inductively [22, 23]. One research assistant coded five transcripts, developed an initial codebook, and reviewed the codebook and transcripts with a second research assistant and a PhD trained qualitative researcher. Based on this discussion, the research assistants revised the codebook before recoding the transcripts. The first research assistant then coded additional transcripts before meeting again and revising the codebook based on new ideas that emerged from subsequent interviews. Any disagreements were discussed until resolved. In total, the team met four times before the codebook was finalized and codes were applied to all transcripts. The first and second research assistant double coded 25% (n = 10) of interviews, achieving at least 80% interrater reliability (Cohen’s kappa).

The content codes were then grouped together to form broader themes that were cross-cutting and provided deeper meaning to participants’ experiences [24]. Research assistants maintained an audit trail documenting coding decisions. We triangulated data from the one-on-one interviews, research assistant notes from each interview, and participant voice journals to arrive at common descriptions of the intervention.

The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist is included in the Online Resource. The study was approved by the University of Pittsburgh Institutional Review Board.

Results

Between April 2019 and March 2021, we interviewed 40 out of 52 participants in the intervention group, and 14 participants completed voice journals. Reasons for missing data include participant study withdrawal (n = 4), death (n = 3), and missing the 3-month data collection point (n = 5). Completers did not significantly differ from non-completers based on socio-demographic or health history. Interviews ranged from 17 to 46 min with an average of 32 min. Voice journal audio files were between 3 and 7 min.

Participants

Table 3 summarizes participant (N = 40) characteristics. Participants’ mean age was 59.9 years old (SD = 12.6), and they equally represented both cancer types (n = 20 breast; n = 20 gynecologic). Most participants were married or living with a partner (n = 25; 65.0%), White (n = 34; 85.0%), had an associate degree or less (n = 23; 57.5%), and had an annual household income < $80,000 (n = 24; 60.0%).

Table 3.

Sample demographics

	Serious game intervention group (N = 40)
	N (%)
Age (mean (standard deviation))	59.9 (12.6)
Relationship status
Married or living with partner	25 (62.5)
Divorced, widowed, or separated	8 (20.0)
Single	7 (17.5)
Ethnicity
Latina	1 (2.5)
Race
White	34 (85.0)
Black	5 (12.5)
Asian	1 (2.5)
Education
High school or GED	11 (27.5)
Associate degree or technical school	12 (30.0)
Bachelor’s degree	9 (22.5)
Master’s, professional, or doctoral degree	8 (20.0)
Annual household income
< $20,000	6 (15.0)
$20–50,000	8 (20.0)
$50–80,000	10 (25.0)
$80–150,000	4 (10.0)
> $150,000	4 (10.0)
Unknown or declined	8 (20.0)
Medical insurance status
Private insurance only	15 (37.5)
Medicare and private insurance	13 (32.5)
Medicaid/medical assistance	5 (12.5)
Medicare only	3 (7.5)
Medicaid and Medicare	3 (7.5)
Veteran’s Administration	1 (2.5)
Financial distress
Somewhat or extremely difficult to pay for basic needs	17 (42.5)
Cancer type
Metastatic breast	20 (50.0)
Advanced gynecologic	20 (50.0)

Strong Together intervention acceptability

Most participants were satisfied with the Strong Together intervention and found it acceptable. They noted the intervention’s simplicity, ability to engage during personal time, and the ease of navigating the program. Although some participants found repeating games — a key game feature thought to promote learning — repetitive, others enjoyed choosing different behaviors across the scenarios: “It seems like every time I went back through it, I learned a little bit more” (Participant 57, age 70, gynecologic cancer). When asked who would most benefit from the intervention, participants stated that people who lack personal or family experiences with cancer, lack supportive social networks, or are timid would most benefit.

The major themes describing participants’ interaction with the serious game — including their reflections on how the game impacted their knowledge and behaviors — are described below with representative quotations located in Table 4.

Table 4.

Qualitative themes representing intervention acceptability

Theme	Representative quotation
Overall acceptability	“I don’t have a lot of support. So, while I was working on the tablet, that helps me a lot. When I got my diagnosis, and even after having the hysterectomy and everything before I started chemo, I’m still numb. I just didn’t feel anything. Before, I was just going with still not really asking anything, because I’m just the type of person I don’t ask for nothing. Yeah. But then you’re going through the tablet. That helped me a lot, then I talked with, my case manager and [physician associate].” (Participant 70, age 58, gynecologic cancer) “I am electronically deficient [laughter], and when they handed me that thing and showed me how to work it, I had no problem.” (Participant 33, age 62, gynecologic cancer) “I have people in my family that are very educated and in the medical field, nurses. And we’ve been through cancer with my mom and my dad and my sister. And I have a huge family, and so I think someone that is not as lucky as I am to have that big of a family and that educated of a family, I think they will benefit from it.” (Participant 2, age 58, breast cancer)
Seeing myself in most scenarios and wanting more content	“I actually related to several of the things that came up as far as– like I’m terrible with asking for help from people, so it just helped me in that way, to know to maybe ask friends or family for more help.” (Patient 14, age 59, breast cancer) “I wish there would have been more of the scenarios because I got done with them relatively quickly, went back, redid them over again and redid them a couple of times.” (Patient 16, age 63, breast cancer) “I also had my husband do the games which was a major help. If I had access to these games where my grown children or siblings could play the game, I would have done that also, I think sometimes I don’t want to ask for help, it’s embarrassing, but when my husband did the game, he was shocked, some things that came up on the game never occurred to him.” (Participant 79, age 73, breast cancer)
Giving me the go ahead to expect more	“I never knew that I could interrupt a doctor to ask a question, to add a new direction to my care.” (Participant 16, age 63, breast cancer) “I realized that I don’t advocate for myself. I really don’t. Like I said, I advocated for my dad when he was sick. I advocated for my mom. But I didn’t do it for myself. And, of course, it was the shock of knowing that I have the cancer. That was part of it. But then I was never one of those people who just jumped right in for me.” (Participant 17, age 61, gynecologic cancer)
Offering ideas for how to stand up for myself	“I think it’s just going through these women’s different ways of handling situations. And it gives you different scenarios that you could try and– yeah, just reading it and picking the answers kind of goes into your brain a little bit that would come up if you have that situation in your life.” (Participant 73, age 68, breast cancer) “It’s comforting. It helps you decide things about whether to go out, whether to run, whether to go shopping, call your doctor, all of the above. So, for me, it was like an outline of, ‘Wow, this is what I should do.’” (Participant 51, age 68, gynecologic cancer)
Reinforcing what I am already doing	“It kind of reinforced things, what you should or should not do. And really nice to help others if they want it.” (Participant 58, age 76, breast cancer) “I just thought that was a good reminder for me. I mean, it’s just to push because I’m not a necessarily pushy person when advocating for myself.” (Participant 78, age 63, gynecologic cancer)
Reminding me of what I have	“It made me think about privilege a lot and who is able to afford to not work and still pay rent and do all these things. And so it made me really think about other people’s experience a lot more than my own because I’m pretty lucky and I have a really strong support system. And so it just kind of made me mad that a lot of people don’t have that. And that even though it was hard for me, it’s astronomically harder for other people to make those choices.” (Participant 59, age 38, gynecologic cancer)

Seeing myself in most scenarios and wanting more content

Participants explained that the game was relatable and realistic. Most participants recognized that even if the characters in the game did not directly match their situation (e.g., age, relationship status), they related to the types of problems the character faced. Some women indicated that they could not relate to the characters in the game. Although the game was not intended to have a first-person perspective or allow participants to personalize the game, when characters’ situations were significantly different from that of the participants, some participants felt the information was less relevant though perhaps useful at a future date: “They had issues that I am not experiencing. But at the same time, I may down the road. So, it was good to know what might be coming as far as other people’s experiences” (Participant 33, age 62, gynecologic cancer). Several participants felt compelled to share the game with their family members so that they could experience what they were going through.

The most consistent comment was the desire for more content: “I’d like it longer. Add another chapter, perhaps. I was left with what happens next?” (Participant 80, age 71, breast cancer). Participants offered suggestions for additional challenging situations they would like to see in future versions of the game including difficult symptoms to manage, financial and employment concerns, and learning how to ask for help from healthcare providers and their social network. They also suggested having additional characters with different backstories than the existing characters.

Importantly, three patients had a negative reaction to a scenario that introduced palliative care. These participants were put off by the idea and thought this was introducing hospice or ending treatment. The topic made them feel “nervous” and “squirmy,” making one woman wonder, “Am I going to get to a point where I feel like [ending treatment]?” Since women were newly diagnosed, they did not want to consider the possibility of treatment not working: “I’m not curable, so when you’re feeling good and you’re thinking positive, I just don’t want to talk about hospice and that kind of stuff, you know?” (Participant 2, age 58, breast cancer). However, few of these participants wanted the scenario to be removed, because they agreed that it was an important discussion to have.

Giving me the go ahead to expect more

Several women, especially those not diagnosed with cancer at an earlier stage, noted that they did not realize they could self-advocate. They did not know self-advocacy was acceptable or even desirable by their healthcare providers. Participants reported that the game gave them “a starting point” to get over a reluctance to challenge the care they are receiving or ask for help when needed: “I think it helps you realize that there are so many ways of handling something. And it’s not that they’re wrong. It’s just some of those ways of handling something results in a better outcome. Sometimes, you feel uncomfortable asking a question, and sometimes, it’s the best way” (Patient 62, age 60, breast cancer). Other participants reflected that prior to being diagnosed with advanced cancer, they advocated for others but had not yet started to advocate for themselves.

Offering ideas for how to stand up for myself

Because of the game’s realness, women visualized how they could replicate what they observed in the game in their lives. Several women used the game for specific, tangible suggestions. They focused on the game’s language, stating that it gave them the words they needed to speak up and ask for help. Some participants played through the same scenario multiple times to get ideas of how to handle situations they encounter: “It gave you an opportunity to continuously go back and click different answers just to see where it would take you” (Patient 17, age 62 gynecologic cancer). Other participants were less specific in what they took away from the game, sharing broader lessons they learned across different parts of the game: “[It] made me realize how important words are, to use the right words when asking for help. And maybe I have a different situation to what they showed on the tablet, but everybody can relate to that in some way” (Participant 10, age 53, breast cancer).

Reinforcing what I am already doing

For women who already felt they were strong self-advocates, the game validated their current approach to managing their cancer. They referred to the game as a “boost” or a “nudge” that solidified their approach managing their cancer, making them feel more confident in asking questions, insisting on getting the care and help they needed, and asking questions when needed: “It didn’t change really how I did anything. It just changed how I felt about doing it. It made me feel like I was doing something right. [laughter] While I had no control over a lot of things, I did have control over how I was responding to things” (Participant 59, age 38, gynecologic cancer). Some women reported learning the need to speak up and insist on aspects of their care when they were diagnosed with an earlier, non-advanced cancer diagnosis or other serious illnesses.

Reminding me of what I have

Some women compared their personal situation to that of the characters and other women with cancer, realizing that they had ample support and skill compared to others with cancer. Several participants noted feeling “lucky” and grateful that they had social support, medical insurance, and supportive healthcare providers. At the same time, it made these participants feel pity for others who lack the resources they have: “It made me feel bad for people who don’t have what I have. I can’t imagine not having family who supports you, and that is who really needs this” (Participant 7, age 63, gynecologic cancer).

Discussion

The Strong Together serious game provided an immersive experience for participants to vicariously explore self-advocacy skills and reinforce how to enact these skills in real life. This study highlights the acceptability of the Strong Together intervention. Participants found the intervention acceptable, easy to use, and relevant. They generally identified with the situations in the game and empathized with the characters, which allowed them to grasp how to self-advocate and the importance of doing so.

Women’s perceptions of the serious game mostly depended on how well they felt they advocated for themselves prior to enrolling in the trial. For some women, the intervention came at a vulnerable time when they needed guidance on what to expect and how to be a self-advocate with their healthcare providers and social network. Other women reported already knowing how to do this but found that the intervention solidified the importance of self-advocating.

This study demonstrates that palliative care patient populations are receptive and supportive of the Strong Together intervention. A recent scoping review demonstrated the increasing prevalence of game-based interventions in promoting patient empowerment and advance care planning, though it also noted that these interventions require greater rigor and evaluation [25]. Using a participatory design and stakeholder input throughout intervention development helps ensure palliative care–focused serious game interventions have high uptake and a greater chance of improving patient outcomes. Future research is needed to evaluate the efficacy of these interventions in large, well-designed trials [26].

Importantly, a small but notable number of participants were distressed by the palliative care content. While the game’s language was designed to carefully introduce palliative care as an extra layer of support for patients and families, it nevertheless raised negative reactions reflecting common misperceptions about palliative care [27], a phenomenon documented in other palliative and end-of-life studies [28]. Current ASCO guidelines recommend introducing palliative care at the time of diagnosis, though findings from this study raise concerns about introducing palliative care within a behavioral intervention outside of clinical care [29]. Since this intervention is not designed to be integrated into clinical care, future self-advocacy trials could consider integrating clinical care teams into the study protocol [30] or patient self-advocacy training [31].

An unexpected finding was the interpersonal ways in which participants engaged with the serious game. Without prompting, participants gave the game to family members to demonstrate their experiences. Also, the game prompted participants to compare their experiences to the characters and others with cancer. While the intervention was intended to build empathy, these comparisons and social sharing may have unintended consequences both in assisting participants to self-advocate and providing a social component similar to other immersive technologies [30, 31]. Future serious game studies should examine the broader social impact of single-player serious games in the context of palliative care.

This study has limitations. It was conducted at one large academic cancer center, which although representative of lower socioeconomic populations is not reflective of national cancer demographics. We were missing qualitative interviews from 23% of intervention participants whose experiences may have been different than completers although they did not demographically differ. Transcripts and results were not returned to participants due to the timing of the analysis. Being able to receive participants’ feedback findings could help ensure the findings’ accuracy.

Conclusion

This study demonstrates the acceptability of the Strong Together intervention for women newly diagnosed with advanced cancer. Future studies examining serious games in the advanced cancer setting should carefully design their games to provide meaningful information in realistic, relatable terms so that both novice and skilled users can gain the learning and behavioral outcomes.

Supplementary Information

Below is the link to the electronic supplementary material.

Author contribution

Thomas: conceptualization, data curation; formal analysis, funding acquisition, investigation, methodology, project administration, resources, software, writing — original draft.

Murray: data curation, formal analysis, investigation, validation, writing — review and editing.

Rosenzweig: conceptualization, resources, supervision, writing — review and editing.

Taylor: supervision, writing — review and editing.

Brufsky: resources, writing — review and editing.

Bender: supervision, methodology, writing — review and editing.

Larkin: data curation, investigation, writing — review and editing.

Schenker: conceptualization, methodology, supervision, writing — review and editing.

Funding

This work was supported by the American Cancer Society Mentored Research Scholar Award (MSRG-18–051-51) and a National Palliative Care Research Center Career Development Award. Dr. Schenker was funded by the NIH/NIA (K24AG070285).

Data availability

Data are available upon reasonable request.

Code availability

Not appropriate.

Declarations

Ethics approval

The study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Institutional Review Board of the University of Pittsburgh.

Consent to participate

Informed consent was obtained from all individual participants included in the study.

Consent for publication

Patients signed informed consent regarding publishing their data.

Competing interests

The authors declare no competing interests.